Life after August: 'On the other side of this grief there's something beautiful'

A candle burns in front of framed photographs of August Chazan-Gabbard near the kitchen of his family's home. Chris Gabbard, an English professor at UNF, and his wife, Ilene Chazan, a physical therapist, lost their son a few months ago.

August Chazan-Gabbard required intensive care for most of his 14 years.

August’s parents keep a candle burning for him, in front of framed photos of their son smiling that big smile of his.

He often smiled, though he couldn’t speak. He couldn’t move his limbs. He had cerebral palsy. He had a microcephalic head. His brain, a doctor said, was like “Swiss cheese,” there were so many dead patches in it.

Who knows what went on inside him?

“I believe he knew us,” August’s mother said. “I believe he did.”

“He was totally in the moment,” August’s father said. Later, he described him this way: “He was a pretty stripped-down version of a human being.”

August was sometimes in pain, especially toward the end. Still, he was often smiling, sitting in his family’s driveway with the Florida sun on his face and with music playing. He would laugh when his father made silly noises. And it was clear he adored his little sister, Clio.

It wasn’t the life anyone would have chosen for him, clearly. But it was, for all its troubles, a life of joy, his parents say. A life worth living.

August Chazan-Gabbard died in October, in the arms of his parents, Chris Gabbard and Ilene Chazan. He was 14.

His parents readily say that taking care of August was often overwhelming, emotionally, physically and financially. It wasn’t easy on their marriage.

Still, Gabbard said it was as if his best friend had died.

“I’d have him back in a heartbeat,” he said.

Five months after August’s death, his parents are trying to figure out how to live this new life. How to find meaning in what their family went through. Trying to keep their son’s memory alive.

Gabbard is an English professor, and he points this out: In narratives about disability, there always has to be a triumphant ending.

In real life, though, sometimes the story just ends.

"For almost everyone, August signifies one of the great tragedies that can befall a family. After his birth, we ourselves lived in the tragic mode, but we soon grew tired of it. August brings us joy, as does his sister."

Chris Gabbard

“A Life Beyond Reason”

Chazan and Gabbard are Californians who moved east when he got a tenure-track position at the University of North Florida.

She is a physical therapist and Pilates instructor. He grew up working in the family business, an irrigation and plumbing-supply store in what would become known as the Silicon Valley.

He itched for something more, though, went back to school and, in his 40s, got his doctorate in 18th-century British literature at Stanford University. That was around the time August was born in a San Francisco hospital in 1999.

“When he was born,” Chazan said, “he was essentially dead.”

August had suffered severe brain damage at birth because of a lack of oxygen; his parents say there were preventable medical problems and a series of wrong decisions made by medical staff. Lawyers looked into it and all passed on the case, seeing no “smoking gun” that would persuade a jury, Gabbard said.

It’s frustrating.

“Almost everything about his life didn’t have to be what it became,” Gabbard said.

When August was 10, Gabbard wrote a beautiful essay about his son for a book called “Papa, PhD: Essays on Fatherhood by Men in the Academy.” The essay was later printed in the Chronicle of Higher Education as “A Life Beyond Reason.”

An agent reached out to him after that was published: Do want to turn it into a book? He declined.

But two days after August died, he called the agent back: “OK, I’ve got a lot to say now.”

He’s writing a book now, about August, about the medical system into which he and his family were plunged. And he’s kept up a website, augustchazangabbard.com, chronicling his son’s life.

"After his birth … here was my son, asleep or unconscious, on a ventilator … what stirred me was the way he resembled me. Nothing had prepared me for this, the shock of recognition, for he was the boy in my own baby pictures, the image of me when I was an infant."

Chris Gabbard

“A Life Beyond Reason”

When August was a child, Chazan suffered a herniated disk in her neck, and after surgery could no longer lift more than 50 pounds. That meant much of the caring was left to Gabbard — the lifting, the diaper-changing, the driving to medical appointments or to August’s school, Mount Herman Exceptional Student Center.

It consumed him, long hours each day. Leaving town was just about impossible. His friends, his social world, became August’s caregivers and doctors. He taught online courses by laptop, next to August’s hospital bed.

Sitting around their kitchen table, telling those stories, they tried to find humor where they can. At least August wasn’t ambulatory, so they didn’t have to worry about him running away. And he wasn’t able to be a head-banger, knocking holes in walls.

They smiled. “This is like the black humor of people who have disabled kids,” Chazan said.

Gabbard didn’t realize, he said, the adrenaline rush that caring for August gave him. He compared it to the movie “Hurt Locker,” where the bomb-disposal expert in Iraq has a hard time adjusting to quiet civilian life.

That pressure, that life on the edge of exhaustion — that had become his identity. Now, without it, he kind of misses it.

Chazan said her husband once told her: I was just mediocre. Then I had August.

August, Chazan said, asked something of you that was extraordinary. Sometimes you could live up to that.

"August’s disabilities are not a blessing; neither are they a divine curse … They simply are what they are."

Chris Gabbard

“A Life Beyond Reason”

Grief is palpable, heavy, a physical presence, Chazan said. Yet you almost don’t want to let it go — not quite yet.

“It’s all you have left,” she said. “If you let go of the grief, you have to accept that they’re gone.”

She looks ahead, though.

“On the other side of this grief there’s something beautiful — that we had this boy for 14 years.”

Over the years, August developed dystonia, which for weeks at a time caused a mysterious arching of his back. He died, his parents said, after he got an upper respiratory infection and couldn’t clear his lungs because of the arching.

The dystonia was painful, but that’s not the story of his life. “When he wasn’t unhappy,” Chazan said, “he was joyful.”

Now, after August, the family is learning to be a threesome. Their daughter Clio is 12, and Gabbard hasn’t had much time with her. She loved her brother deeply, but she sometimes complained how her father had to spend so much time away from her.

But this is a really good time, Chazan said, for her father to step back into her life.

The family lives near the duck pond in San Marco, and after August’s death 200 people came to a ceremony there for him. Friends, neighbors, students from Mount Herman.

Oct. 19 was a sunny day, and the crowd overflowed from a big white tent. There were songs and prayers, and balloons were offered to the sky.

Clio said this about her brother: “He fell in love with everyone who ever touched him or who was a part of his life.” At the end, the children in the crowd sang August’s favorite song, Raffi’s jaunty song about a banana phone.

And there was a video slide-show remembrance of August’s life, running backward in time: from 14-year-old to toddler, from brand-new baby to a picture of his mother, pregnant, on the Northern California coast.

Death is Nothing At All
Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.

Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Think of me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.

Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?

I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.